LogoThis Week in CGREAL

a newsletter of the Center for Genetic Research Ethics & Law in the Department of Bioethics, Case Western Reserve University

September 7 , 2007 


Home * Genetics in the News * Genetics in the Literature * Archive


Center News

Welcome to John Huss, who will be working with CGREAL as a faculty associate.  Dr. Huss is an Assistant Professor in the Department of Philosophy at the University of Akron. 

Katrina Goddard's article, "Awareness and use of direct-to-consumer
nutrigenomic tests, United States, 2006
" was published in the August issue of Genetics in Medicine.

Jennifer Fishman and Bob Binstock presented "Anti-Aging Scientists and the Politics of Presentation" at the annual conference of the British Society of Gerontology meeting this week. 

The 2007 CGREAL Annual Retreat will be Friday, November 2, 2007 at Squire Valleevue Farm.

Save the Date! 

May 1-3, 2008
Cleveland, Ohio, USA Translating “ELSI”: International Congress on
Ethical, Legal and Social Implications of Genomics

Co-Sponsored by The ELSI Program of NHGRI & CGREAL

 


Opportunities

ESF-ORI First World Conference on Research Integrity: Fostering Responsible Research

September 16-19
Lisbon, Portugal

Eyes on the Prize: Truth Telling about Genetic Testing
September 20-21
Washington DC

NE Ohio ACRP: Promoting Excellence in Clinical Research Conference
September 21, 2007

Health Policy Research FELLOWSHIP
Due September 30

A Perfect Match? DNA in Law Enforcement

October 1, 2007

Washington DC

4S Meeting: Ways of Knowing

October 11-13, 2007

Montreal

 

Challenging Assumptions: Religious Faith, Genetic Science, Human Dignity

October 12-14

Portland, OR

Call for Papers:
What's The Use of Race?
Due October 15
Cambridge, MA

The Future of Genomic Medicine: A Satellite Symposium of the American Society of Human Genetics Annual Meeting
October 22
San Diego California


Testing genes, profiling DNA: The global governance of genomics - hopes, duties and security
Nov 1

3rd Annual Corsage Workshop: Contingencies of Genomics - Finding Roads into the Future

Utrecht, Netherlands

Due 6 November

One Origin, One Race, One Earth: Genetics, Human Rights and the Next Phase of Human Evolution
November 15


Netherlands Genomics Initiative:  Genomics Momentum 2007
November 28


Annual HRPP Conference | PRIM&R
December 2-4
Boston, MA.

3rd Annual Corsage Workshop: Contingencies of Genomics - Finding Roads into the Future

13 December, 2007 Utrecht, Netherlands


What's The Use of Race?
April 25-26, 2008
Cambridge, MA

Translating “ELSI”: International Congress on
Ethical, Legal and Social Implications of Genomics

May 1-3, 2008
Cleveland, Ohio

 

Please contact Eric Juengst if you are submitting an abstract or are interested in a coordinated CGREAL submission.

Resources

 

Centers for Excellence in ELSI Research (CEER)

 

Genetics in the News

All about Craig: the first 'full' genome sequence (Nature) "Revealing that the genetic pioneer has wet earwax, and more... ..." [Related:  Mapping own DNA changes scientist's life (CNN) "Venter is part of a new kind of scientific explorer whose uncharted territory was his own gene ... How one scientist became the experiment (Globe and Mail) "Venter says he's prepared to have his genome stand as a free reference for the world's researchers and hopes it sets a precedent. ..."Genome maps to the stars (globe and mail) "The shortlist of celebrities and business elites asking to have their genomes mapped is about to get longer. ..." How was Venter's genome project different from Watson's? ...]

Human Genome Project is beginning to bear fruit (McClatchy Washington Bureau ) "Now the genome project is beginning to bear fruit. A bumper crop of fresh discoveries connects specific bits of DNA to numerous diseases, including cancer, diabetes, blindness and AIDS. ..."

Consumer and Physician Awareness of Nutrigenomic Tests Is Low "Just 1 in 7 Americans has even heard of direct-to-consumer (DTC) nutrigenomic testing genetic tests used to make individualized recommendations for disease prevention. ..." [Related:  Home DNA tests create medical, ethical quandaries (San Francisco Chronicle)"While this brave new world of consumer genetic testing may offer convenience and privacy, it's largely unregulated and quality may vary widely. ..." Is the Pink or Blue early baby gender DNA test accurate? (Eye on DNA)]

Federal agency rejects enhanced oversight of genetic tests "In a decision that places cost concerns above public health, the Centers for Medicare and Medicaid Services (CMS) has rejected a petition filed by a coalition of health and consumer groups calling for the agency to strengthen standards for genetic testing laboratories. ..." [Related: ABC News: Answers to Your Genetic Testing Questions "Colleen McBride of NHGRI Takes Your Questions ..."]

HFEA statement on its decision regarding hybrid embryos "Having looked at all the evidence the Authority has decided that there is no fundamental reason to prevent cytoplasmic hybrid research. ..." [Related: Scientists Hope to Create Human-Animal Embryo (NPR ) "The move came despite fierce opposition from some church and ethics groups. ..." ]

DNA From the Dead: DNA Banking is Legal, but is it Ethical? Part I (The Genetic Genealogist ) "There are number of companies that offer DNA retrieval from recently deceased individuals. Kauber-Miller Funeral Home in Pataskala, Ohio has been using DNA Connections to offer storage service to bereaved families. ..."

Genetics, medicine and insurance | Do Not Ask or Do Not Answer? (Economist.com) "Rapid advances in genetic testing promise to transform medicine, but they may up-end the insurance business in the process ..."

Databases must balance privacy, utility, says statistics professor "Organizations face challenge of protecting confidential records useful to researchers ..."

An Abigail Alliance Interview (Drug Law Blog) "And if the drug companies choose not to make drugs available on the grounds that they are worried about liability then I think that s a tragedy but I understand where they re coming from. ..."

When HIPAA Hurts (Bioethics Forum) "I m sure the lawyers who wrote HIPAA and similar laws were just trying to protect people. I m also increasingly sure that M.D. s are going to need J.D. s to feel safe enough to provide the care they wish they could. ..."

Gene-Therapy Deaths Raise Ethics Issues (Wired) "The tragedy highlights the ethics of testing risky therapies on patients whose ailments are not life-threatening and are controlled by other means. ..."

Is It Time For a Flex Plan? (Washingtonpost.com) "We have a new norm in sports. Athletes routinely are enhanced. Many of their achievements are as dependent on technology as they are on talent, dedication and spirit ..." [Related: 'Mighty mice' made mightier "The scientist who first showed that the absence of the protein myostatin leads to oversized muscles in mice and men has now found a second protein, follistatin, whose overproduction in mice lacking myostatin doubles the muscle-building effect. ..."]

Slaughter s bill on gene profile bias undone by Dr. No (The Buffalo News)"Senator blocks bill after it passes House by a 420-3 vote ..."

Has our DNA database gone too far? (BBC ) "There is a new intensity to the argument because the government is seeking to lower the threshold of offences for which a DNA sample can be required by the police. ..."

Interview with Dana Waring, A Founder of the Personal Genetics Education Project (The Genetic Genealogist)

Moving Genomics Into Clinical Care"NHGRI has recently created the Genomic Healthcare Branch (GHB) to help bridge the gap between genomic discoveries made in the research lab and the realities faced by patients and healthcare providers in the clinic. ..."

DNA Ancestry: Genealogy through the power of DNA testing "Ancestry.com is adding a powerful new dimension to genealogical research by integrating the world’s largest online collection of historical records and family trees with DNA testing. Currently in beta, DNA Ancestry is another way we’re helping people expand their family trees and connect with family across distance and time. ..."

Humans' DNA not quite so similar (Yahoo! News) "People are less alike than scientists had thought when it comes to the billions of building blocks that make up each individual's DNA, according to a new analysis. ..." [Related: Finding said to show "race isn't real" scrapped"A scientist has backed off a finding that he, joined by others, long touted as evidence for what they called a proven fact: that racial differences among people are imaginary. ..."]

How the public perceives biotech "The term "biotechnology" elicits a range of emotions, from wonder and awe to fear and hostility. ..."

NIH Roadmap grant establishes field of geroscience at Buck Institute "$25 million award creates interdisciplinary consortium focused on aging and chronic disease ..." [Related: NIH launches interdisciplinary research consortia "The NIH Roadmap for Medical Research will fund nine interdisciplinary research consortia as a means of integrating aspects of different disciplines to address health challenges that have been resistant to traditional research approaches. .."]

Genes, Environment and Health Initiative invests in genetic studies, environmental monitoring "NIH has selected the first projects to be funded as part of the Genes, Environment and Health Initiative (GEI), a unique collaboration between geneticists and environmental scientists. ..." [Related: Traffic Fumes Plus Genes Boosts Kids' Asthma Risk (Washington Post)]

Simple Blood Test For BRCA Gene Mutation Helps Save Lives

Longevity to be the next wellness trend, says Campbell (Food Navigator ) "In the next ten years, I predict we won't use the term 'wellness' anymore, we'll use 'live longer' as a basis for how we market products," .." [Related: Latest in skin care is all in the genes (The Boston Globe) "The salon is offering a new service of DNA testing to identify the culprits accelerating your skin's aging. ..."]

Small But Growing Movement Seeks To Lengthen Life By Eating Less -- Much Less (CBS News) "Eat less, alot less, and live longer and feel younger. ..." [Related: Can a diet of a quarter fewer calories than a body needs lead Boomers to that ever elusive fountain of youth? (San Francisco Chronicle) "No one knows how many people are practicing CR, what followers say is "a way of living" instead of a diet. ..." Scientists reveal how dietary restriction cleans cells "Cutting calories helps rodents live longer by boosting cells ability to recycle damaged parts. ..."]

FTC Stops Spammers Selling Bogus Human Growth Hormone Anti-Aging Products "Alleges Defendants Send Illegal E-mails via Web Form Hijacking and Make False and Unsubstantiated Product Claims ..."

The Undiscovered Country (American Scientist) "The statistics of death show leaps in modern life expectancy but fail to answer the question: Why do we die? ..."

Disease resistance may be genetic "Disease resistance in families magnifies natural selection ..." [Related: Same gene protects from 1 disease, opens door to another "Botanists have discovered that a single plant gene can cause resistance to one disease at the same time it produces susceptibility to a different disease ..."]

'Skinny gene' does exist" Researchers have found that a single gene might control whether or not individuals tend to pile on fat, a discovery that may point to new ways to fight obesity and diabetes. ..." [Related: Fat? I ve just got big genes (Times Online) "A study published this week has shown that genetics is becoming the explanation of choice for people who become seriously obese. ..."]

High and mighty: first common height gene identified "Now, scientists have identified the first gene, known as HMGA2, a common variant of which directly influences height. ..."

Schizophrenia genes 'favoured by evolution' (Nature) "The discovery suggests that genes linked to the debilitating brain condition conferred some advantage that allowed them to persist in the population although it is far from clear what this advantage might have been. ..."

Gene regulation in humans is closer than expected to simple organisms "The most basic underlying principles and strategies used by the genomes of higher organisms to regulate gene expression are quite close to those used by simple organisms like bacteria and yeast. ..."

South Korea to clone drug-sniffing dogs (Syndney Morning Herald) "A South Korean laboratory that produced the world's first cloned dogs is looking to get into the business of cloning canines, first by cloning drug-sniffing dogs ..."


Genetics in the Literature

De Grey, A. D. N. J. and M. Rae (2007). Ending aging : the rejuvenation biotechnology that could reverse human aging in our lifetime. New York, N.Y., St. Martin's Press. "They explain that the aging of the human body, just like the aging of man-made machines, results from an accumulation of various types of damage. As with man-made machines, this damage can periodically be repaired, leading to indefinite extension of the machine’s fully functional lifetime. We are moving rapidly toward the comprehensive development of technologies to remove that damage. By demystifying aging and its postponement for the nonspecialist reader, de Grey and Rae systematically dismantle the fatalist presumption that aging will forever defeat the efforts of medical science. ..."

Mazur, D. J. (2007). Evaluating the science and ethics of research on humans : a guide for IRB members. Baltimore, Johns Hopkins University Press.

"A comprehensive volume designed to impart the experience and wisdom of its author, Dennis J. Mazur, in the area of preparing and evaluating institutional review board (IRB) submissions. Mazur's belief in the need to protect study participants (as part of his humanizing efforts, he shies away from referring to them as "subjects") leads him to make and support the claim that "the IRB may be the only steadfast proponent of optimal protection of research study participants" . Throughout the volume, Mazur reiterates his conviction that research should benefit the participants at least as much as it furthers the careers of the researchers. He urges IRB members to adopt this focus. ..."

National Institutes of Health (NIH) (2007). Policy for Sharing of Data Obtained in NIH Supported or Conducted Genome-Wide Association Studies (GWAS) "The NIH has just released it's final policy regarding data sharing in NIH supported genome-wide association studies (GWAS). The policy addresses (1) data sharing procedures, (2) data access principles, (3) intellectual property, and (4) issues regarding the protection of research participants through all phases of GWAS. Many of the principles contained in the policy reflect existing NIH polices and other NIH discussions. The goal of the policy is to advance science for the benefit of the public through the creation of a centralized NIH GWAS data repository. Maximizing the availability of resources facilitates research and enables medical science to better address the health needs of people based on their individual genetic information. ..."

United Nations Educational Scientific and Cultural Organization (2007). Educating Bioethics Committees"Article 23 of the Declaration – Bioethics Education, Training and Information – is specifically germane to Guide No. 3. It affirms that ‘States should endeavour to foster bioethics education and training at all levels as well as to encourage information and knowledge dissemination programmes about bioethics’. This Guide, like Guides 1 and 2, is specifically intended to foster bioethics education by providing support to present and future chairpersons and members of Bioethics Committees as they initiate and continue to pursue their bioethics education. This is an open-ended process, since novel bioethical issues, dilemmas, patients’ cases and cases of scientific misconduct continue to emerge almost daily in various Member States. ..."

(2007). "Ageing." Nature Reviews Molecular Cell Biology 8. "Nature Reviews Molecular Cell Biology presents a special focus on ageing published in September 2007. The newly-commissioned articles in this Focus provide an overview of this fast-moving field. ..."

(2007). "Life as we know it." Nature 449(7158): 1-1.

(2007). "New models of collaboration in genome-wide association studies: the Genetic Association Information Network." Nat Genet 39(9): 1045-1051."GAIN has used new approaches for project selection, data deposition and distribution, collaborative analysis, publication and protection from premature intellectual property claims. These demonstrate a new commitment to shared scientific knowledge that should facilitate rapid advances in understanding the genetics of complex diseases. ..."

(2007). "Pulling rank." Nature 448(7157): 969-969.

Asslaber, M., P. M. Abuja, et al. (2007). "The Genome Austria Tissue Bank (GATiB)." Pathobiology 74(4): 251-258. "In the context of the Austrian Genome Program, a tissue bank is being established (Genome Austria Tissue Bank, GATiB) which is based on a collection of diseased and corresponding normal tissues representing a great variety of diseases at their natural frequency of occurrence from a non-selected Central European population of more than 700,000 patients. . ..."

Bodurtha, J. N., J. M. Quillin, et al. (2007). "Recruiting diverse patients to a breast cancer risk communication trial--waiting rooms can improve access." J Natl Med Assoc 99(8): 917-22."In secondary analyses, we examined dimensions of the recruitment of these diverse women. Although there were statistically significant race and age differences between the study sample and the overall population, we demonstrate that waiting room recruitment can engage diverse women in a clinical trial and cancer risk communication. ..."

Conrad, D. F. and M. E. Hurles (2007). "The population genetics of structural variation." Nat Genet 39(7 Suppl): S30-6."Despite current limitations in our knowledge of the locations, sizes and mutational origins of structural variants, our characterization of their population genetics is developing apace, bringing new insights into recent human adaptation, genome biology and disease. We summarize recent dramatic advances, describe the diverse mutational origins of chromosomal rearrangements and argue that their complexity necessitates a re-evaluation of existing population genetic methods. ..."

Crouch, S. J., K. R. Rowell, et al. (2007). "Umbilical cord blood for newborn DNA identification." J Obstet Gynecol Neonatal Nurs 36(4): 308-12.

" To compare umbilical cord blood with newborn heel stick blood for newborn DNA identification. Prospective, correlational, comparative analysis utilizing a convenience sample of birth mothers and newborns. Umbilical cord blood samples are a valid source of newborn DNA identification. ..."

Duncan, R. E., L. Gillam, et al. (2007). ""Holding your breath": Interviews with young people who have undergone predictive genetic testing for Huntington disease." Am J Med Genet A 143(17): 1984-9. "We aimed to (1) explore the experience of predictive genetic testing for HD from the young person's perspective and to (2) document the impact that testing has upon various aspects of young people's lives. Three themes emerged related to the time before the test was performed: "Living as though gene-positive," "Risk behaviors," and "Complex pasts." Two themes emerged related to the time after testing: "Identity difficulties" and "Living again." ..."

Elisavet T. Gatzidou, A. N. Z. S. E. T. (2007). "Toxicogenomics: a pivotal piece in the puzzle of toxicological research." Journal of Applied Toxicology 27(4): 302-309. "Toxicogenomics, resulting from the merge of conventional toxicology with functional genomics, being the scientific field studying the complex interactions between the cellular genome, toxic agents in the environment, organ dysfunction and disease state. In the present review, the applications of toxicogenomics, especially to mechanistic and predictive toxicology are reported. . . ..."

Ellerin, B. E., R. J. Schneider, et al. (2005). "Ethical, legal, and social issues related to genomics and cancer research: the impending crisis." J Am Coll Radiol 2(11): 919-26."The authors examine 6 of these issues: (1) informed consent; (2) privacy, confidentiality, and family disclosure dilemmas; (3) property rights in genomic discoveries; (4) individual and institutional conflicts of interest; (5) insurance and employment issues; and (6) litigation under the federal False Claims Act. The authors conclude that failure to resolve these issues may lead to a sufficient impairment of trust in genomics-based clinical trials on the part of potential research participants that the clinical trial system may implode for lack of willing participants, thus threatening the future of cancer research. ..."

Everitt, A. V. and D. G. Le Couteur (2007). "Life Extension by Calorie Restriction in Humans." Ann NY Acad Sci: annals.1396.005. "Thus the effects of CR on human life extension are probably much smaller than those achieved by medical and public health interventions, which have extended life by about 30 years in developed countries in the 20th century, by greatly reducing deaths from infections, accidents and cardiovascular disease. ..."

Finkel, T., M. Serrano, et al. (2007). "The common biology of cancer and ageing." Nature 448(7155): 767-774.

Fleck, L. M. (2007). "Can We Trust "Democratic Deliberation"?" Hastings Center Report 37(4): 22-25."Democratic deliberation produce a sufficiently trustworthy and politically legitimate system for national regulation of the industries and health professionals involved in reprogenetics. ..."

Fossett, J. W. (2007). "Managing Reproductive Pluralism: The Case for Decentralized Governance." Hastings Center Report: 20-22."A decentralized system offers a means of experimenting with alternative means of regulating reproduction. Embryonic stem cell research is more controversial than other areas of scientific research. Dependence on the current decentralized system has its costs with regards to efficiency and consistency. It has the great virtue of accommodating moral diversity and allowing citizens to live under moral regimes. ..."

Frazzetto, G. and C. Gross (2007). "Beyond susceptibility. Behavioural genetics can advance our understanding of psychiatric disorders, but might not meet the expectations for new cures." EMBO Rep 8 Spec No: S3-6.

Friedman, J. Y., J. Sugarman, et al. (2007). "Perspectives of clinical research coordinators on disclosing financial conflicts of interest to potential research participants." Clinical Trials 4(3): 272-278. "We developed a survey designed to measure clinical research coordinators' awareness of financial interests in clinical research, previous experience with disclosing financial interests, comfort with answering questions about financial interests and barriers to disclosing financial interests to potential research participants. Making information about financial interests in research readily available to clinical research coordinators, as well as providing education and training, should facilitate the disclosure of financial interests in research to potential research participants during the informed consent process. ..."

Frohna, A. Z. (2007). "Evaluating the Science and Ethics of Research on Humans: A Guide for IRB Members." JAMA 298(9): 1069-1070.

Furger, F. and F. Fukuyama (2007). "A Proposal for Modernizing the Regulation of Human Biotechnologies." Hastings Center Report 37(4): 16-20."A new regulatory architecture is required which must be flexible and dynamic yet rooted in widely acceptable ethical principles. A proposal is made up of a set of ethical guiding principles, a set of prohibited and regulated activities, and a new regulatory institution. An important reason for ignoring the failure to look beyond the special interests is that there appeared to be no practicable way to correct the problem. ..."

Haimes, E. and R. Williams (2007). "Sociology, ethics, and the priority of the particular: learning from a case study of genetic deliberations." The British Journal of Sociology 58(3): 457-476. "There are growing debates about the relationship between the two disciplines of sociology and ethics, particularly as they each become increasingly involved in research and policy formation on the life sciences, especially genetics. This article uses an existing collaboration between a sociologist and an ethicist, on a study of participation in genetic databases, to explore some of the challenges, for both disciplines, of working together. Building upon this case study, we examine the suggestion that the Aristotelian concept of phronesis provides the grounds for establishing one possible theoretical framework with which the disciplines can be bridged. . ..."

Haran, J. (2007). "Managing the boundaries between maverick cloners and mainstream scientists: the life cycle of a news event in a contested field." New Genetics and Society 26(2): 203 - 219. "This article discussed the ways in which expertise was claimed by or attributed to Dr Zavos and other key media sources. It argues that three key boundaries were demarcated in the coverage as journalists framed the stories in terms provided by Zavos's antagonists, mainstream scientists. It also discusses the engagement in tactics of news management by an organised grouping of UK scientists who attempted to shape the terrain of news coverage on the subject of cloning. The question of the extent to which interested scientists should be able to set the terms of media debate is explored. ..."

Henrikson, N. B., J. N. Harris, et al. (2007). "Predictors of Self-Referral into a Cancer Genetics Registry." Cancer Epidemiol Biomarkers Prev 16(7): 1387-1392. "There were two main objectives of this study: to examine differences between participants who were self-referred and those who were recruited into a cancer genetics registry and to identify predictors of self-referral status. Our results suggest that whereas groups recruited via different strategies may seem to be the same based on demographic variables, underlying psychosocial variables differ between those self-referring and those recruited via population-based screening. ..."

Izquierdo, A., T. K. Newman, et al. (2007). "Genetic modulation of cognitive flexibility and socioemotional behavior in rhesus monkeys." Proceedings of the National Academy of Sciences 104(35): 14128-14133. "We tested rhesus monkeys carrying orthologous structural variants of 5-HTT on a battery of tasks that assess cognitive flexibility, reward processing, and emotion. Although emotional alterations associated with 5-HTT variation have been described as the primary phenotype, the present study reports differences in at least one type of cognitive flexibility, which has not been described previously. ..."

Johnston, J. (2007). "Tied Up in Nots over Genetic Parentage." Hastings Center Report 37(4): 28-31."One of the prohibitions that they suggest is key to safeguarding the interests of children. However, they do not set out substantive recommendations as to what should be prohibited, permitted or regulated. They focus instead on detailing the regulatory mechanism itself. Nevertheless, they identify general ethical principles that the regulatory system should promote. ..."

Jollant, F., C. Buresi, et al. (2007). "The influence of four serotonin-related genes on decision-making in suicide attempters." American Journal of Medical Genetics Part B: Neuropsychiatric Genetics 144B(5): 615-624. "In this study, we aimed to investigate the influence of four serotonin-related genes relevant to suicidal behavior on decision-making, in a large population of suicide attempters. We hypothesize that the influence of genetic factors on the vulnerability to suicidal behavior may partly be achieved through their modulation of decision-making and particularly its learning component. ..."

Klitzman, R., Thorne, et al. (2007). "The roles of family members, health care workers, and others in decision-making processes about genetic testing among individuals at risk for Huntington disease." Genetics in Medicine 9(6): 358-371."To understand how individuals at risk for Huntington disease view the roles of others, e.g., family members and health care workers, in decision making about genetic testing.  This report, the first to our knowledge to explore individuals' perceptions of social factors (particularly family and health care worker involvement) in Huntington disease testing decisions, has critical implications for practice, education, research, and policy. ..."

Lacana, E., S. Amur, et al. (2007). "The Emerging Role of Pharmacogenomics in Biologics." Clin Pharmacol Ther

"The studies described here highlight a growing interest in the use of pharmacogenomics in assessing the safety and efficacy of biologics. ..."

Levy, S., G. Sutton, et al. (2007). "The Diploid Genome Sequence of an Individual Human." PLoS Biology 5(10): e254. "Presented here is a genome sequence of an individual human (Craig Venter). It was sequenced by Sanger dideoxy technology and assembled into 4,528 scaffolds, comprising 2,810 million bases (Mb) of contiguous sequence with approximately 7.5-fold coverage for any given region. These data depict a definitive molecular portrait of a diploid human genome that provides a starting point for future genome comparisons and enables an era of individualized genomic information. ..."

Li, Y. L., A. G. Steinberg, et al. (2007). "Assessing parental attitudes toward genetic testing for childhood hearing loss: Before and after genetic consultation." American Journal of Medical Genetics Part A 143A(14): 1546-1553.

McGregor, J. L. (2007). "Population Genomics and Research Ethics with Socially Identifable Groups." J Law Med Ethics 35(3): 356-370.

MILANOVIC, F., D. PONTILLE, et al. (2007). "Biobanking and Data Sharing: a Plurality of Exchange Regimes." Genomics, Society and Policy 3(1): 17-30"This paper presents an ethnographic study of three French human biobanks. Building on field work (participant observation and in-depth interviews), the study focuses on data access in the concrete practices in biobanks. The paper develops a perspective based on an analysis of different exchange regimes. We argue that access practices are submitted to the different regimes that can coexist and be articulated within the daily activities of each biobank. We also discuss how this perspective can further our understanding of biomedical research, and how it might inform data access policy. ..."

Mittra, J. (2007). "Marginalising "eugenic anxiety" through a rhetoric of "liberal choice": a critique of the House of Commons Select Committee Report on reproductive technologies." New Genetics and Society 26(2): 159 - 179.

"In light of a recent House of Commons Select Committee investigation into the regulation of human reproductive technologies, this article critically evaluates the Committee's case for a devolved, libertarian-inspired framework for the regulation of reproductive technologies. This article suggests that failure to consider the cultural and political context within which new technologies are shaped and social needs constructed might undermine any ostensible virtues of a devolved system of governance for reproductive medicine. ..."

Myers, E. R., L. J. Havrilesky, et al. (2006). "Genomic tests for ovarian cancer detection and management." Evid Rep Technol Assess (Full Rep)(145): 1-100."To assess the evidence that the use of genomic tests for ovarian cancer screening, diagnosis, and treatment leads to improved outcomes. We evaluated tests to seek evidence on: (a) the analytic performance of tests in clinical laboratories; (b) the sensitivity and specificity of tests in different patient populations; (c) the clinical impact of testing in asymptomatic women, women with suspected ovarian cancer, and women with diagnosed ovarian cancer; (d) the harms of genomic testing; and (e) the impact of direct-to-consumer and direct-to-physician advertising on appropriate use of tests. There are reasonable data on the clinical laboratory performance of most radioimmunoassays, but the majority of the data on other genomic tests comes from research laboratories. Although research remains promising, adaptation of genomic tests into clinical practice must await appropriately designed and powered studies in relevant clinical settings. ..."

MYSKJA, B. K. (2007). "Lay expertise: Why involve the public in biobank governance?" Genomics, Society and Policy 3(1): 1-16." The challenge is that lay people are often ignorant in the relevant matters and wish to leave governance to experts. Still, there are normative reasons for lay engagement, either as stakeholders or as citizens in a deliberative democracy. According to the second approach, political decisions should be based on an inclusive open debate aimed at the better argument, providing lay people a crucial role in governance. In order to include lay people without making them hostage to experts, politicians or interest groups, we can engage them in focus group interviews which are analysed by social scientists and included in the interdisciplinary debate in journals and political forums. ..."

Neresini, F. (2007). "Eve's sons." New Genetics and Society 26(2): 221 - 233. "The aim of this article is to use the episode of the baby allegedly cloned by the Raelians and born on the day after Christmas 2002 in order to analyse what is threatened by the prospect of cloning as a reproductive method, and why it is a matter of such importance as to provoke immediate and general condemnation. The case of the Raelians strains the reproduction/identity nexus in an extreme way which highlights what otherwise may lie buried beneath a thick layer of taken-for-granted beliefs. ..."

Ni, X. a., T. a. Sicard, et al. (2007). "Monoamine oxidase A gene is associated with borderline personality disorder." Psychiatric Genetics 17(3): 153-157. "As for its role in aggression, impulsivity, suicide and mood liability, monoamine oxidase A can be considered a functional candidate in borderline personality disorder. To test for this hypothesis we genotyped two polymorphic markers in monoamine oxidase A gene in 111 Caucasian borderline personality disorder patients and 289 Caucasian healthy controls. These results show that the monoamine oxidase A gene may play an important role in the etiological development of the borderline personality disorder. ..."

Ossorio, P. N. (2007). "The Human Genome as Common Heritage: Common Sense or Legal Nonsense?" J Law Med Ethics 35(3): 425-439.

Owen, R. P., T. E. Klein, et al. (2007). "The Education Potential of the Pharmacogenetics and Pharmacogenomics Knowledge Base (PharmGKB)." Clin Pharmacol Ther.

Pivetti, M. (2007). "Natural and unnatural: activists' representations of animal biotechnology." New Genetics and Society 26(2): 137 - 157. "Social representations of animal biotechnology were examined with a total of 22 animal welfare and rights activists in five focus groups. Content analysis of interview data showed that the social representation of animal biotechnology was organized according to intersecting utilitarian and moral reasoning. On one hand, activists were supportive of the medical applications of animal biotechnology and of their potential to help cure diseases. On the other hand, activists' concerns included a fundamental moral objection to the human use of animals in general, and a more specific objection to their genetic modification. ..."

Rao, R. (2007). "Genes and Spleens: Property, Contract, or Privacy Rights in the Human Body?" J Law Med Ethics 35(3): 371-382.

..."

Robertson, J. A. (2007). "The Virtues of Muddling Through." Hastings Center Report 37(4): 26-28."The article comments on the general ethical principles formulated by Francis Fukuyama and Franco Furger. The regulatory structure proposed by the two is clever but disembodied. Their policy would not do any better in issues such as human-animal chimeras and germline alteration. ..."

Segal, M. E., M. Polansky, et al. (2007). "Adults' values and attitudes about genetic testing for obesity risk in children." Int J Pediatr Obes 2(1): 11-21. "We explored personal attitudes about genetic testing of children for obesity risk among parents of overweight children. Parents were more likely to want testing for their children when 1) genetically-targeted drug treatment would be available or 2) a positive test would be associated with a prognosis for developing diabetes although there was interest in neither of these, particularly among separated/divorced parents, and those whose children were not dieting. Even if treatment were not available, more than three-quarters believed testing should be available, more than one-third of them at birth. . ..."

Sjoholm, M. I. L., J. Dillner, et al. (2007). "Assessing Quality and Functionality of DNA from Fresh and Archival Dried Blood Spots and Recommendations for Quality Control Guidelines." Clin Chem 53(8): 1401-1407

"Background: Dried blood spots (DBS) are a convenient and inexpensive method for biobanking. Although many countries have established population-based DBS biobanks from neonatal screening programs, the quality and usefulness of DNA from DBS have not been extensively assessed. ..."

Soini, S. (2007). "Preimplantation genetic diagnosis (PGD) in Europe: diversity of legislation a challenge to the community and its citizens." Med Law 26(2): 309-23."The European member states have very diverse regulation on PGD. Some countries totally ban PGD, while the others keep close track of the new applications. The people in need of PGD seek it in the other member states. These cross-border treatments cause psychological stress and pose many so far unresolved legal questions. The individuals need more information about all the aspects of PGD. This article analyses contemporary indications for PGD in Europe and relevant ethical discussion, and second, shows the diversity in regulation and reflects the consequences thereof. ..."

Stock, G. and D. Callahan "Debate: The Ethics of Life Extension." Rejuvenation Research 0(0): 407-416.

TallBear, K. (2007). "Narratives of Race and Indigeneity in the Genographic Project." J Law Med Ethics 35(3): 412-424.

Tarini, B. A. (2007). "The Current Revolution in Newborn Screening: New Technology, Old Controversies." Arch Pediatr Adolesc Med 161(8): 767-772."However, the history of newborn screening is not without controversy. Many of these controversies have been rekindled with the introduction of tandem mass spectrometry, a technology that has greatly increased our ability to detect potential disease in asymptomatic newborns. This review highlights the challenges raised by this and future technological advances as we strive to maintain the success of newborn screening in the 21st century. ..."

Töpf, A. L., M. T. P. Gilbert, et al. (2007). "Ancient human mtDNA genotypes from England reveal lost variation over the last millennium." Biology Letters 3(5): 550-553."We analysed the historical genetic diversity of human populations in Europe at the mtDNA control region for 48 ancient Britons who lived between ca AD 300 and 1000, and compared these with 6320 modern mtDNA genotypes from England and across Europe and the Middle East. We found that the historical sample shows greater genetic diversity than for modern England and other modern populations, indicating the loss of diversity over the last millennium. ..."

Tsosie, R. (2007). "Cultural Challenges to Biotechnology: Native American Genetic Resources and the Concept of Cultural Harm." J Law Med Ethics 35(3): 396-411.

Tsosie, R. and J. L. McGregor (2007). "Genome Justice: Genetics and Group Rights." J Law Med Ethics 35(3): 352-a-355.

Tuljapurkar, S. D., C. O. Puleston, et al. (2007). "Why Men Matter: Mating Patterns Drive Evolution of Human Lifespan." PLoS ONE 2(8): e785.

Underkuffler, L. S. (2007). "Human Genetics Studies: The Case for Group Rights." J Law Med Ethics 35(3): 383-395.

Veerapen, R. J. (2007). "Informed Consent: Physician Inexperience is a Material Risk for Patients." J Law Med Ethics 35(3): 478-485.

Welsh, I., A. Plows, et al. (2007). "Human rights and genomics: science, genomics and social movements at the 2004 London Social Forum." New Genetics and Society 26(2): 123 - 135. "We draw on participant observation in the third meeting of the European Social Forum (ESF) sessions on science and genomics and offer an evaluation of Rothman's (2000) argument that NGOs and protest movements have a vital role to play in consolidating and disseminating the UN Universal Declaration on the Human Genome and Human Rights. The paper positions the ESF as a constituent part of the World Social Forum network, identifies the key ESF networks and actors concerned with science and genomics, and analyses the various action, grievance and mobilisation frames generated within the 2004 ESF. ..."

Winickoff, D. E. (2007). "Partnership in U.K. Biobank: A Third Way for Genomic Property?" J Law Med Ethics 35(3): 440-456.

Wray, N. R., M. E. Goddard, et al. (2007). "Prediction of individual genetic risk to disease from genome-wide association studies." Genome Res. " In this study, we investigate the number and effect size of risk loci that underlie complex disease constrained by the disease parameters of prevalence and heritability. Then we quantify the value of prediction of genetic risk to disease using a range of realistic combinations of the number, size, and distribution of risk effects that underlie complex diseases. We propose an approach to assess the genetic risk of a disease in healthy individuals, based on dense genome-wide SNP panels. ..."

Zwart, N. H. (2007). "Genomics and self-knowledge: implications for societal research and debate." New Genetics and Society 26(2): 181 - 202. "In this article it is claimed that, as genomics takes us beyond a genetic deterministic understanding of life, this must have consequences for societal research and debate as well. Policies for self-improvement will increasingly rely on the use of complex interpretation. Therefore, the emphasis must shift from issues such as genetic manipulation and human enhancement to issues involved in governance of novel forms of information. ..."

 

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